Pain diminishing

[MalloryMoss]

Hi All

Wanted to post an update and share what I'm doing with my diet:

I was diagnosed on 20th October 2023, put on 15mg Pred, 1 month later reduced to 12.5mg then Saturday 16th Dec reduced to 10mg, at first all the pain and stiffness reappeared and I was gutted but it was "only" 6/10 and after taking 1 x 500mg Paracetamol it dealt with the pain. Today (19th Dec) I woke to less pain than last week (when I was on 12.5mg) I'm absolutely delighted as I was thinking I would have to go back to 12.5mg. I know its still early days and this is a journey, but I wanted to post a positive note and let you know what I've been doing with my diet.

Since 20th Oct I've been on a mission with my diet, I've made my own Tumeric/Ginger/Pepper/ Pineapple shots which I take first thing, I take Magnesium, Calcium, D3 and Omega 3 (from kelp) supplements and I also took Aloe Vera juice for 3 weeks, I made my own Omega 3 mix which is Walnuts, Chia and Flaxseed which I whizz up in my nutribullet. I take all this each morning with Kefir, greek yoghurt and berries and sometimes a banana and organic oats. I have a weekly organic veg and fruit delivery from a local company. For lunch I eat smoked mackerel whizzed in my nutribullet with creme friache, horseradish and mustard which is a lot nicer to eat with raw veg than just eating fish (for me anyway). I eat very low carb and have cut out sugar except for some honey (we keep bees). I also eat as much fermented food as possible with my lunch (e.g. sauerkraut). Then for tea I just make sure its low carb, lots of veg and local free range/grass fed meat. I also have a very positive mindset, I'm grateful this condition is treatable and one day will be in remission.

I've started walking, I live where there are lots of hills, I'm upto 3 miles "normal" pace, out of breath and heart pumping but feeling good, then I balance this with some rest. However if anyone read my bio, I was a GB Age Group Athlete till struck down with PMR so I reckon the small weight gain is lack of exercise which I'm monitoring closely. I'm also a swimming coach for a local swimming club, this keeps me mentally happy and engaged in sport to which I hope to be back to one day....in some form or another.

[piglette]

You might just be getting steroid withdrawal on reducing. That normally lasts two or three days after reducing and can be helped with something like paracetamol. A flare normally takes a week or two to happen.

Dr Tim Spector reckons you should have at least 32 different fruit and veg each week, that includes seeds, herbs and spices, so you are probably doing pretty well. Also having fermented food and variety is good news. I love smoked mackerel, I don’t think I could manage it every day though. It is also suggested that it is better to not whizz up fruit as nutrients get destroyed when they are cut up. I don’t know if you do or not? I am currently reading Tim Spector's book Food for Life, which I find really interesting.

[PMRpro Ambassador in reply to piglette]

The worst thing about whizzing up fruit is losing the benefit of the fibre which is broken up and the quick release of sugar into the body - "makes it easier to absorb" says one marketing comment!

[MalloryMoss in reply to piglette]

Hi Piglette thanks for the advice on withdrawal, that makes sense, I thought it would take a week but was really pleased only 3 days. I didn't know fruit nutrients were impacted upon whizzing, I'll take that onboard. I'll look that book up. I'm reading the Paleo Ketogenic book by Dr Sarah Myhill, which is interesting.

[piglette in reply to MalloryMoss]

I am none too sure about Dr Myhill. She has been banned from practising medicine by the GMC more than once. The latest being this January on false claims on Covid treatment. I also feel that her books are a way of selling her vastly over priced vitamins. Perhaps I am biased!!

[MalloryMoss in reply to piglette]

oh heck I didn't know about that, I'll research this a bit more, This forum is great for advice and insight, thank you

[piglette in reply to MalloryMoss]

She sounds quite an interesting individual. I am not sure about her medical knowledge though. She only works privately (inbetween the bans!). She says that the NHS was too ‘restrictive’.

[MalloryMoss in reply to piglette]

I watched a Netflix programme about her and liked what she had to say, outspoken, pushing against the establishment, promoting nutrition against pharmaceutical drugs, hence buying the book. Perhaps that's why she's gone after 🤷‍♀️

[piglette in reply to MalloryMoss]

I have heard she is a good speaker. I think the nutrition she promotes is her over priced vitamins not your organic veg delivery type nutrition!!

[PMRpro Ambassador in reply to piglette]

I think "persuasive" is the non-litigious way of describing her lectures!!

[piglette in reply to PMRpro]

Persuasion is useful when you are selling over priced products!

[PMRpro Ambassador in reply to piglette]

Absolutely!

[PMRpro Ambassador]

Well done - and it sounds as if the pain you experienced was your body protesting at the change in dose, steroid withdrawal, and paracetamol does often help with that.

If you really want to be "very low carb" watch out for your bananas and oats - lots of carbs hiding there, it would have taken me well above my limit when I did very low carb.

[DorsetLady PMRGCAuk volunteer]

Steroid withdrawal - explained here -

healthunlocked.com/pmrgcauk...

[MalloryMoss in reply to DorsetLady]

thank you!

[MalloryMoss]

thanks PMRpro yes I do need to go further with the low carb, out goes the bananas and oats! I don't like how I feel with the extra bit of weight on, even at only a couple of kilo.

[Frewen1 in reply to MalloryMoss]

What a very interesting conversation, and firstly, MM, congratulations on all you've done and are doing. I am trying to associate with all this information but it's different with GCA - I don't get pain (or didn't get pain) in the same way. Except for the past few months - a sudden onset of everything hurting - an arm, and the opposite foot from the one with the broken ankle, joints aching in general - just overnight pain and discomfort. Dragging myself around when walking, trying to walk at my normal speed but feeling as if being held back. I've been on 2mgs Pred for about 2-3 months. This particular trouble began when I was down to 6mgs - then it subsided, but now is back. Do you think I should stay at 2mgs indefinitely, or try for 1 and a half? Anyway, good luck to all who read this, and wishing you all a very peaceful and restful Christmas (if that isn't an oxymoron). Karen xx

[DorsetLady PMRGCAuk volunteer in reply to Frewen1]

Unfortunately higher doses of Pred have the habit of masking other normal everyday pains of life .. and probably more so when you’ve been on GCA doses]. I found my osteoarthritis pains came roaring back whilst I was still in low teens - starting dose of 80 so perhaps all relative to what you’ve been on previously. So would say the majority of your pains are “real life” pains, but adrenals being sluggish can give random aches and pains for some people. Which maybe why they disappeared for a while and now have returned.

I’d be included to stay at 2mg for another couple of months…get over the holiday season and the worst of the winter weather- giving your adrenals a real chance to get their act together- and then try tapering again - with a very slow taper we witter on about all time……

[Frewen1 in reply to DorsetLady]

Thank you so much, DL.

[PMRpro Ambassador in reply to Frewen1]

And for what it's worth - I agree with DL's recipe!

[Frewen1 in reply to PMRpro]

Thank you!

[Ridge]

Well I think your energy of purpose will see you through and your journey will be interesting. Do keep us posted on how you do and I’m so sorry that you have been felled in this way at such an early age while enjoying everything so much.

[MalloryMoss]

thank you Ridge I will post updates

[Carnivoreyogi]

Thanks so much for sharing your success with us--I love hearing these stories. Sounds like your mind set, diet and background fitness are all helping you taper well so far. I have been on an extreme low carb diet as well--it's been 9 months since my diagnosis and going on prednisone. I think I initially tapered too quickly and am only now down to 7.0 prednisone, with some pain, but totally manageable. I'm going to start incorporating the tumeric, etc into my diet and see if that helps. Thanks again and congrats to you on your progress so far : )

[PMRpro Ambassador in reply to Carnivoreyogi]

"it's been 9 months since my diagnosis and going on prednisone. I think I initially tapered too quickly and am only now down to 7.0 prednisone"

Half of patients reach 5mg after 15 months - which means half take longer. To be at 7mg after only 9 months is well ahead of the curve. But you say you have some pain - be careful, the level of pain relief you got in the first weeks on the starting dose is your guide. If the pain at the enf of a taper step is more than it was at the start, you have overshot.

[Carnivoreyogi in reply to PMRpro]

Thank you so much for this info! I really do need to moderate my expecations. Even when I think I am being slow and patient, I see that there is still an underlying impatience to get on with the tapering. My starting dose at the beginning of March 2023 was 30mg which seemed like an unusually high dose to start with on PMR. I tapered to 15 over 6 weeks and still had good pain relief. I don't think I had any pain for the those first several weeks. I tapered too quickly from April into June, was working a lot, and my CRP levels went up to 84. So I had to start over at 20mg in July and have been slowly tapering since then. Your note makes me wonder if I should up my dose to 8mg (where I was pain free) and then go more slowly down to 7mg again? I don't mind the bit of pain, but also want to listen to the voice of experience--I really appreciate your perspective on this PMRpro! What a super resource.

[PMRpro Ambassador in reply to Carnivoreyogi]

I think that would be a good idea - it may well be that you need 8mg at present. It doesn't mean you won't get lower, just not yet. It isn't whether you MIND a bit of pain, but if you have pain, there is likely to be a bit of inflammation left over and it gets to a level that you can feel. Over time, those little drips of inflammation build up, like a dripping tap will eventually fill a bucket and overflow unless the same volume that is dripping is removed each day. It isn't a virtue to put up with some pain - it may be your downfall and lead to having to go back to a higher dose to clear it out.

[Carnivoreyogi in reply to PMRpro]

That totally makes sense. Thanks for explaining it this way. I'm going back to 8mg for a while : )

[MalloryMoss in reply to Carnivoreyogi]

Thank you Carnivoreyogi, I posted because I too love hearing these kind of stories, which is why I wanted to share my progress with this group. I'm applying the same dedication to this just like I would a triathlon challenge. My husband is also benefiting, his osteoarthritis and specifically his hand which has been very painful is less, and he told me this morning that he was able to open something intricate which he's not been able to do for a long time. I'm keen to push on with the taper but very aware of the pitfalls. My next appointment is in January with my Dr is to discuss the taper plan from 10mg. 🤞 By the way if you are going to incorporate Tumeric make sure you add pepper which helps it absorb. Good luck!